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Posts: 20

Topic: Latest ct scan results

I go to NYC in the morning to find out if the cancer is still quiet. Hoping and praying that is so. I know I'm not supposed to worry, and I'm supposed to trust in God, but it's hard.

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Latest ct scan results

I don't think you would be human if you didn't worry. I am hoping and praying for you to get great news. Please let us know when you find out.

Love and hugs,-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Latest ct scan results

Re: Latest ct scan results

Doggone it! I wanted to post in the good news section! It's not the worst news, but it could be better.New nodal involvement at the tip of the pancreas involving another blood vessel, of course. Dr. Fong doesn't want to try to remove it because of where it is. There are a few options like IRE (electricity) or microwave ablation. But he wants me to talk with rad onc. So I got an appt for Monday with dr. Meyer to discuss radiation or other courses of action. Dr. Fong wants to look at other options because I look so healthy and doing the ablation would be like another major surgery.$@##%!!! I was hoping nothing had changed.We discussed clinical trials. He said the cancer cells no longer have clearly defined edges because of the necrosis so phase III trials would probably not take me. Phase II might, but there's no way of knowing if I would actually be getting treated or getting a placebo. And Phase I trials are mostly to see if how new drugs affect people, not necessarily the cancer, and since I'm no sick he wouldn't recommend that.

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

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Kris, ok, so, not the worse but just a few too many maybes. Like me, you want definites. At least you may have an answer next Monday. The important thing is you are in good hands and still have options. Get busy girl on your Poker Event!

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Kris....as you said - not the best of news and not the worst of news to receive. And, you have options for possible treatments - that is the good news within the not so good. Hang in there, dear Kris -the glass is still half full.Hugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Latest ct scan results

€%#*€£¥!!! I'm adding my sentiment to yours... It is ironic that you're too healthy for a treatment like ablation though it sounds like Dr Fong wants to keep it that way. I certainly see how phase 1 or 2 clinical trials don't sound appealing now that you explained them. Please know you are in my thoughts as you meet with rad dr and make a decision for a plan of action. Willow

Re: Latest ct scan results

Grrrrrrr....... Sorry that you are not posting in the good news section Kris like you and all of us hoped that you would be. Yes, as you say, not the best news but not the worst either. I so hope that you will get much better news from your meeting on Monday with the rad onc and my fingers are crossed for the for you. Go play a few hands of poker, sing a few of your fav classics at the karaoke and worry about Monday on Monday if you can.

Take a big hug too,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Latest ct scan results

I just feel like I got kicked in the gut!! How can the old cells still be behaving and new ones pop up? Why dont I know when this happens?? We have all gotten so used to listening to every blip in our bodies: I can't stand that when I'm confident, that's when things go wrong.., and when I'm nervous because of some twinges, feelings, etc, everything is status quo. It doesn't make sense.

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

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I am so sorry, Kris. But does ANYTHING about this CCC (Crazy Cholangio) make sense? IF it did none of us would have to be here and go on our merry way. I thnk I know you girl and it will take a few days to reconoiter and regroup and you will again be on your way! Like my T used to say, "now we know what's wrong, lets fix it".

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Hi, Kris,You are a happy warrior , your positive attitude shines through in your message yesterday even the result was not what you expected. It takes a lot of courage to report those unexpected occurrence.This disease is unpredictable ,difficult to diagnosis and prognosis is uncertain. But there are more research being done for this disease and hopefully some good treatments will pop up in the future for all of us. However a magical bullet is still far beyond reach .That is why I pray each nite and thank Him for the good fortune God give me all these extra days since my diagnosis in May,2009. Only He knows when the time is come for each of us. your joyful spirit and courage will lift up a lot of others on this board. Thanks and God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

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Dear Percy, You are so right in your thoughts for Kris. I heard a good one the other day on a TV Movie. I think this is so true! "God has a plan AND he doesn't have to ask us for permission". So, we do the best we can and I agree Kris is a real warriorand her great attitude is shining through even if it is not seeming so to her. And you, are such a good example for us all!

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Here's more. I got the results of my cancer bloods. Everything is down. My ca19-9 is at 62 which is the lowest it's ever been (its been as high as 1074). My alphafetaprotein is 2.8. The only time it's been lower is one year ago today. My CEA is at 2.7. It has basically run from 2.3-3.5 most of this journey.My alkaline phosphates is high at 160. But it hasn't been under 130 yet. And my bilirubin is basically a constant 0.9. Red, white and platelets are all still a little low, although only platelets are outside "normal" range. Everything else looks good.And, yes, I spent time licking my wounds. Even got drunk last night, although I know alcohol is one of the worst things for you. And I didn't get drunk enough! Just 3 drinks, but it prob put me over the limit. Today I hid. Tonight I go back out in public with my public face (which stayed home last night) and work and play poker and sing.And, on a side note, one of my new songs is Mary Chapin Carpenter's I Feel Lucky. It was playing on the radio as I drove to the station. And I rerouted around a huge traffic jam and made the train with 1 minute to spare! It was a "lucky" morning and I was so sure I was going to hear good news.... BLAH!!

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Latest ct scan results

Well, I go tomorrow to talk to the rad onc. I just hope he has some ideas of what to do...

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Latest ct scan results

Loads of positive thoughts are heading towards you Kris. Everything is crossed for you and I hope the rad onc gives you some good news and a new plan.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

The information expressed is not medical advice. The discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians or other healthcare providers. Read the full disclaimer.